New draft NICE guidelines for chronic pain emphasises exercise, CBT and acupuncture over medication

So there’s 3 psychologists / psychiatrists on the committee (including the Chair), and another 2 co-opted psychologists / psychiatrists (including an “addiction specialist psychiatrist”!) , a few consultants working in NHS pain clinics including one for “pain transformation”, a couple of GPs, a rheumatologist, nurse, physio OT. And two lay members.

And then just one person qualified in clinical pharmacology.
 
Jonathan Edwards said:
It would be interesting to know who the patient representatives on the pain committee were and what their views are..
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Both seem to value non-pharmacological interventions for chronic pain.

Lucy Ryan is co-ordinator of the Pelvic Partnership (a charity) and a former occupational therapist who suffers from hEDS. She is also a lay member of the NICE guideline committees for urinary incontinence and pelvic organ prolapse.

The Pelvic Partnership adheres to a mind-body (biopsychosocial) explanation of chronic pain, wherein the "chronic pain cycle" is perpetuated by factors such as " muscular de-conditioning and fatigue", "emotional problems including anxiety and depression", "personal relationships" and "weight management". It suggests treating it with "medication, physiotherapy, acupuncture, counselling, cognitive behavioural therapy (CBT), relaxation techniques and more" as well as a range of complementary and alternative therapies. It also recommends "‘hands-on’ manual therapy from an experienced physiotherapist, osteopath or chiropractor" as an "effective" treatment for pelvic girdle pain.

In a page on the Pelvic Partnership's website, Lucy Ryan wrote: "manual therapy from my Physiotherapist has been key to regaining better function in my pelvis and back, reducing the pain I experience and regaining my independence".

She is quoted in NICE's press release on the publication of the chronic pain guideline:

Lucy Ryan, a patient representative on the guideline committee, said: “This guideline will provide more consistency in treatment and support on the NHS for people experiencing chronic pain. I am pleased that it has highlighted the potential risks of some of the drugs used to treat chronic primary pain as I feel people are sometimes not made aware of these. I am also pleased that the guideline provides alternative treatment choices and that gaps in research have been identified. I hope that this will mean future guidelines will incorporate many more options for people managing chronic primary pain following further research. Everyone with chronic pain experiences pain differently so I feel the more options available to help people effectively manage their pain the better.”​

Colin Wilkinson is a member of the public advisory board of Health Data Research UK and volunteer at Versus Arthritis.

According to a recent Insights piece in the Lancet Rheumatology, he suffers from "psoriatic arthritis, osteoporosis, and the consequences of septic arthritis" and "first presented with symptoms of arthritis at age 18". Some quotes:

"(...) Back then, in the 1990s, the only treatments that helped me were painkillers and anti-inflammatories—much less was known about inflammatory arthritis”. It was amitriptyline that finally helped control the pain.
​
Physical activity seems to help him keep his mind off of the pain:

There is a hint of what might have been in Colin’s story, but he takes what he calls a phlegmatic attitude—“You have to believe that everything will be alright in the end”, he says, adding “otherwise you wouldn’t get through the day”. How does he maintain this proclivity for optimism?

“[During] the quiet period [following a worsening of symptoms in 2009], I was very active physically. I enjoyed the outdoors and went on conservation holidays, so I had that, and in some ways consider myself lucky. (...)".

Similarly, during the pandemic, Colin is focusing on staying mobile. While shielding, he has created gardening projects, and established his own distraction technique of making proggy mats (made out of material rags pushed or pulled through a hessian backing). Distraction is very much recommended for pain management, particularly for chronic pain.

[...]

Colin is testament to navigating illness with a holistic approach led by a curiosity and individual perspective, finding out what works, and combining medical treatments with non-medical interventions and activities.
​
It is uncertain that he is aware of pacing:

“If you’re going through hell, keep going”, says Colin Wilkinson, borrowing the sentiment widely attributed to Winston Churchill. (...) Churchill’s war-time speeches remain timeless in their meaning: overcoming adversity and being the stronger for it. Colin absolutely embodies this spirit.​
 
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It sure sounds like who was selected to the process was the actual process, made to guarantee a predetermined outcome. Same problem with the 2007 ME guidelines and the same that almost happened again for the current ones, heavily stacked with an ideological bias. This perspective by a patient representative is as unrealistic as when children start spewing BPS buzzwords as if they were the ones who came up with them.

It's impossible to argue that this selection is representative of the patient population. It's too detached from reality, works within a manufactured reality. The process is corrupt, no two ways about it.
 
Been thinking about this a lot. Is there a process for challenging NICE once guidelines are out - are any pain charities / groups / people thinking of doing this? I’m glad there’s a FOI request being put in. But surely there must be a way to challenge this - on many grounds - one being the unethical aspect of it (leaving someone in serious pain, which may not be treatable with anti depressants), and also the make-up of the committee (extremely skewed towards mind-body approaches, not balanced, therefore using their own experiences rather than the experiences of many others who are in severe pain for whom these approaches didn’t work, or the experiences of doctors who treat pain who know patients for whom these mind body approaches do nothing, doctors who work with conditions that have severe pain eg Severe ME/CFS, fibro etc - after all many with these conditions may end up caught up in these guidelines before diagnosis)?

I think its unethical. Pain is terrible. I would think it is a doctors duty to do all they can to alleviate someone’s pain and to make them as comfortable as possible. firstly, where do they get the idea from that anti depressants have more of an evidence base or are safer, than gabapentin / pregablin? Why do they recommend against them, even though those are the ones often prescribed for nerve pain and for fibro? why also do they specifically say no local anaesthetics (ie lidocaine), when it is prescribed to those with severe nerve pain conditions when it is often resistant to other medications, and are given in pain clinics? Why no opioids when they could otherwise have been given short term until at least the person finds out what their condition is / what’s causing the pain and so goes down another specialised pathway? Why not even paracetamol?

The way they’ve suddenly withheld medications is baffling to me. It genuinely doesn’t make sense - this will leave people in horrendous pain. It’s not opening up options, it’s closing then all down. In my experience it’s very difficult to get pain medication in the first place, but at least before there weren’t guidelines saying don’t prescribe. It also doesn’t bode well for us because if “primary chronic pain”, ie not yet explained by another condition (but which could be diagnosed later), can be made better by talking therapies, psychology, exercise and anti depressants, then doctors will of course think, why should it be any different for all pain, including neurological pain, or fibro pain, or ME pain like ours?
 
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It's pretty mild but I have rarely seen open criticism of Simon Wessely in UK medical circles. Is the king's naked butt starting to show? Maybe a crack in the armor? (pun very intended)


New NICE guideline: antidepressants and chronic pain — chicken or egg?

https://bjgp.org/content/71/708/320

In July 2014, Sir Simon Wessely stated in an article in The Times entitled, Pain may be in the mind, that: ‘Many of them [chronic pain patients] have mental health disorders — anxiety, depression, etc’, and that, ‘patients felt dismissed and denigrated when they were referred to mental health services … ’.2

As patient safety campaigners, we are hearing from many people who are developing ‘unexplained’ chronic pain conditions after taking antidepressants (ADs), as prescribed, and sometimes over many years — and this has often led to polypharmacy with other drugs added ‘for symptoms’ along the way, most likely including ADs, benzodiazepines, Z-drugs, opioids, and/or gabapentinoids. These are the five classes of drugs included in the Public Health England (PHE) review of dependence and withdrawal associated with some prescribed medicines, which reported in September 2019.3

...

As quoted in The Times article, Sir Simon Wessely and his associates are always keen to attribute everything to people’s ‘depression’ and ‘anxiety’, and to treat with ADs. There have been many concerns raised about ADs, which seem in this new primary chronic pain guidance1 to be completely overlooked by NICE, once again.​

There may be fortuitous timing in the Royal Society of Psychiatry begrudgingly having to admit that maybe those millions of complaints of the side-effects of ADs maybe possibly had some truth to it, and how they feature prominently in the new guidelines. Then again how many of those patients who "developed" a pain condition would have anyway, it's just that they were given useless medication that could not prevent it from happening?

I dare say that maybe psychiatry has reached a peak from which the only way is down, none of the claims and ideas this specialty have built over the last several decades stand up to any scrutiny at all. And to think that the current trend would further escalate commitment to the BPS ideology.
 
Another other other other new "physiotherapy-led model of care". Because clearly there aren't already enough, since they are all essentially identical for all intents and purposes in a real sense there is only one model.

PACE apologist and generally unpleasant chronic illness denier:

 
Amw66 said:
I sincerely hope those with severe mental illness have advocates
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I am just as much wary of the definition of "severe mental illness" because obviously a BPS framing qualifies severe ME as such, as well as basically any chronic illness on the severe end. Or the universal exclusion of MUS/FND. The only thing that is constant in psychosomatics is empire-building, it aims to creep everywhere for no other reason that to gain relevance. It accomplishes absolutely nothing once it gains a foothold but gaining footholds is all that counts, like a business set on infinite linear revenue growth, the only aim is profit, whether monetary of reputational. Or more like a dog chasing cars. Doesn't what to do once it catches one but it'll keep chasing another one as soon as it comes into view.
 
rvallee said:
I am just as much wary of the definition of "severe mental illness" because obviously a BPS framing qualifies severe ME as such, as well as basically any chronic illness on the severe end. Or the universal exclusion of MUS/FND. The only thing that is constant in psychosomatics is empire-building, it aims to creep everywhere for no other reason that to gain relevance. It accomplishes absolutely nothing once it gains a foothold but gaining footholds is all that counts, like a business set on infinite linear revenue growth, the only aim is profit, whether monetary of reputational. Or more like a dog chasing cars. Doesn't what to do once it catches one but it'll keep chasing another one as soon as it comes into view.
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In England (NHS), the phrase 'severe mental illness' has a specific medical meaning, usually only given to people whose illness includes an element of psychosis. Major clinical depression alone doesn't usually get included unless it has a bipolar element or unless so severe the person has been hospitalised or sectioned because of its severity (even then I am not sure it is given).

See:

https://www.gov.uk/government/publi...ess-and-physical-health-inequalities-briefing

There is a flag on GP notes to identify someone with SMI. I have never heard of anyone given this diagnosis for ME or CFS alone as it is reserved for particular named mental illnesses. For example, the SMI flag is not given to people with autism unless they have a relevant co-morbid severe mental illness.
 
I couldn't find the criticism by C. Eccleston, Amanda Williams et al. on the forum so just leave the link here:

Eccleston, C., Aldington, D., Moore, A., & de C Williams, A. C. (2021). Pragmatic but flawed: the NICE guideline on chronic pain. The Lancet, 397(10289), 2029–2031. doi:10.1016/s0140-6736(21)01058-8

sci-hub.se/10.1016/s0140-6736(21)01058-8

Arnie Pye said:
That link no longer exists. What a surprise.
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All documents from the guideline development process have moved to that page:

https://www.nice.org.uk/guidance/ng193/history

Guideline committee member list: https://www.nice.org.uk/guidance/ng193/documents/committee-member-list-2

Consultation -- Comments and response: https://www.nice.org.uk/guidance/ng193/documents/consultation-comments-and-responses
 
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MSEsperanza said:
Eccleston, C., Aldington, D., Moore, A., & de C Williams, A. C. (2021). Pragmatic but flawed: the NICE guideline on chronic pain. The Lancet, 397(10289), 2029–2031. doi:10.1016/s0140-6736(21)01058-8
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Amanda Williams (coauthor of this response to the chronic pain guideline) resigned from the guideline committee.

Excerpts:
In our view, the NICE guideline takes an oversimplified approach and presents chronic primary pain as a diagnosis of exclusion: “Think about a diagnosis of chronic primary pain if there is no clear underlying (secondary) cause, or the pain or its impact is out of proportion to any observable injury or disease, particularly when the pain is causing significant distress and disability.”1 We share the concerns of the UK Faculty of Pain Medicine and others about this misreading of chronic primary pain.6,7

Pain is not an index of damage, but a warning signal. The current science is inadequate to describe detailed mechanisms for each pain and each patient in pain. Self-report of pain is the gold standard; observers consistently underestimate pain compared with patients.8 The implication that patients exaggerate pain and are thus undeserving of medical attention increases the risks of harm to patients from mistreatment and withholding appropriate care.
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In terms of therapy, the NICE guideline recommends exercise programmes and physical activity, psychological therapy—specifically, acceptance and commitment therapy (ACT) and cognitive behavioural therapy— acupuncture, and antidepressants, but not other therapies, notably antiepileptic drugs and non-steroidal anti-inflammatory drugs (NSAIDs). The guideline may be pragmatic, but the chasm between pragmatism and best evidence is deep and wide.

The NICE recommendations endorse ACT and exercise against the prevailing evidence9–11 and acupuncture, despite the major limitations of acupuncture trials.12 In the guideline, the segregation of physical exercise and activity from psychological therapies and from their combination in pain management programmes promotes simple labels for treatments over what is actually delivered to patients. These therapies form a continuum of interventions designed to change behaviour towards greater participation and improved quality of life.
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A large number of stakeholders made detailed and critical comments on the draft NICE guidance. Much is known about the evaluation of pain trials and their many forms of bias; however, so much has been overlooked by NICE. Recommending some therapies that are supported by weak evidence risks adding to stigma and social rejection that thrive when an illness and the validity of those experiencing it are contested.18 NICE had an opportunity to provide pragmatic guidance informed by the best understanding of the present best evidence, thereby informing a rigorous research agenda. The guideline may be pragmatic, but we believe it is flawed.
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Thanks for the excerpts, @Hutan .

I didn't check the references but at a quick glance, Eccleston and Williams seem to have some reasonable points?

- "Self-report of pain is the gold standard; observers consistently underestimate pain compared with patients.[8] The implication that patients exaggerate pain and are thus undeserving of medical attention increases the risks of harm to patients from mistreatment and withholding appropriate care."

"The NICE recommendations endorse ACT and exercise against the prevailing evidence [9–11] and acupuncture, despite the major limitations of acupuncture trials." [12]

These are the references in case anyone wanted to have a look:

[8] Seers T, Derry S, Seers K, Moore RA. Professionals underestimate patients' pain: a comprehensive review. Pain. 2018 May;159(5):811-818. doi: 10.1097/j.pain.0000000000001165. PMID: 29351169.
https://pubmed.ncbi.nlm.nih.gov/29351169/

[9] Williams ACC, Fisher E, Hearn L, Eccleston C. Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database Syst Rev. 2020 Aug 12;8(8):CD007407. doi: 10.1002/14651858.CD007407.pub4. PMID: 32794606; PMCID: PMC7437545.
https://pubmed.ncbi.nlm.nih.gov/32794606/

[10] Williams, Amanda C de Ca,*; Fisher, Emmab,c; Hearn, Leslieb; Eccleston, Christopherc Evidence-based psychological interventions for adults with chronic pain: precision, control, quality, and equipoise, PAIN: August 2021 - Volume 162 - Issue 8 - p 2149-2153 doi: 10.1097/j.pain.0000000000002273 https://journals.lww.com/pain/Citat..._based_psychological_interventions_for.1.aspx

[11] Colvin LA, Smith BH. Physical activity and exercise for chronic pain in adults: an overview of Cochrane Reviews. Cochrane Database Syst Rev. 2017 Apr 24;4(4):CD011279. doi: 10.1002/14651858.CD011279.pub3. PMID: 28436583; PMCID: PMC5461882. https://pubmed.ncbi.nlm.nih.gov/28436583/#hmb

[12] Derry CJ, Derry S, McQuay HJ, Moore RA. Systematic review of systematic reviews of acupuncture published 1996-2005. Clin Med (Lond). 2006 Jul-Aug;6(4):381-6. doi: 10.7861/clinmedicine.6-4-381. PMID: 16956145; PMCID: PMC4953522. https://pubmed.ncbi.nlm.nih.gov/16956145/

There are more points that go into details of their disaproving of NICE's evaluation of the evidence that I couldn't make sense of from skimming.

I thought the critique could be relevant with regard to some of the Royal Colleges' comments on NICE ME/CFS guideline committe's review of the evidence.

Also, perhaps Eccleston could have a say on the update of the Cochrane review? -- https://papas.cochrane.org/news/emeritus-coordinating-editor-chris-eccleston.

Sorry, not able to have a look at that myself ATM.
 
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MSEsperanza said:
at a quick glance, Eccleston and Williams seem to have some reasonable points
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At another quick glance, the reasonable points were made on a background that is rather 'mixed':

MSEsperanza said:
"Self-report of pain is the gold standard;
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Per se that is certainly right. I don't get from their paper why they highlight this is in their criticism of the NICE guideline, but it seems that they want to make a point about taking patients seriously and belief their reports of pain in the clinical setting. That's good.

However what they miss to criticize is the role of subjective outcomes in the assessment of evidence from clinical trials.

I forgot that Eccleston's and Williams' Cochrane review on chronic pain was already discussed here.

Just to reiterate what we repeatedly discussed on the forum:

In a trial setting subjective outcomes still matter, but if a clinical trial can't be blinded due to the nature of the intervention, there need to be objective outcomes in addition -- to corroborate the subjective outcomes.

This seems to be a point that some clinicians and researchers consistently confuse:

Experiencing symptoms and reporting them to a doctor because you need medical help is not the same as reporting treatment effects on symptoms.

Giving feedback to doctors and therapists about their treatment always is influenced by psychosocial factors so has a high risk of bias, that's why trials are done.

What is the sense of doing a trial for an intervention that cant' be blinded to patients and therapists if you don't corroborate subjective reports with objective outcomes?
 
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